When asked about Lizzie’s speech capabilities, I’ve always said that she is non-verbal but not non-vocal. Lizzie sings very nicely. Not words, mind you, but a sing-song melody that is all hers. She’s also very good at yelling (and screaming) when appropriate. She loves to test out big open spaces such as school gyms during assemblies, the library, and church. Our priest actually joked that if she knew the words, he’d sign her up for the choir. So, I know my daughter’s voice, but her words are not something we’re very familiar with.

I remember once when we were in the neurologists office, my daughter was making sounds that she had been making at home for a while. Something that sounded like, “Aw Duh.” The doctor looked at her, smiled, and said, “Yes, Lizzie, we’re all done.” It was like a lightbulb went on over my head. She was saying, “All Done.” A phrase they’d been using at school when they complete an activity for years. Ironically, my daughter used this phrase throughout both her EEG and her sleep study that year as if to say, “I’m all done, Mom. Can we go home now?” Of course she was completely miserable and crying when she said it, so it tore at my heart. I just wanted to get those leads off her head and get her out of there, but of course I couldn’t. And how do you explain to someone with almost no words that yes I understand you, but no I can’t give you what you want?

My daughter doesn’t use words very often, but when she does, they usually pack a wallop for me. Once when we were shopping at Wal-Mart, my son was pushing Lizzie. We have an arrangement, if I take both kids to the store (which is rare, because I usually shop when they are both at school) that my son either pushes the cart, or his sister. My son has ADHD and was in one of his wild moods that day. He started rushing around with her, taking corners too fast. All of a sudden I heard. “MOM. MOM,” very distinctly, and very stressed. I looked down to see Lizzie looking at me imploringly. I took over pushing her, and she stopped. Relaxed and happy again that Mommy was at the helm. Of course my son threw a fit, so I put his butt in the cart and pushed her pulling him behind me, and made a mental note, “Only shop during school time.”

These things happen few and far between. And words she uses today, I may not hear again for 6 months if ever. I wish she would talk to me every day, but she can’t. But when she needs those words, they seem to find her.

After her last seizure, we were in the ER. I realized about 1:30 or so that Lizzie hadn’t eaten that day. She had the seizure only moments after I started her morning feeding, and I had to stop it for safety reasons. We went to the hospital via ambulance and then spent time in the ER. They’d given meds and fluids, but no food. G-tubes make it hard to get food in an ER, because they have to order a feeding pump and the right formula, and they must have an extension tube that fits your button. We carry an extra extension now (actually a few) because of this. Lizzie had only woken up a little while before, and I was discussing with the nurse the possibility of getting food started. Lizzie grabbed her tube button and looked up at me, “Ba,” she said, “Ba.” We’ve always called her feeding a “Baba” because it used to come in a bottle when she was a baby and then we would tube feed the rest. Baba just stuck. This was not something I’ve seen from her before, or heard.

Which brings us to today. I was getting Lizzie out of her stander. I had laid it down, and was getting ready to take her out. I started goofing around and kissing her forehead and moving back and forth to see if she would track me. She looked right at me and said, “Aw duh,” not once but about four times. It was as if she was saying. “I’m all done now, Mom. Get me out of here.” She stopped when I answered her. “Yes, Lizzie, you’re all done now. Let’s get you out of there.” She smiled.

I hope that someday my daughter is going to shock everyone when she suddenly starts talking like there is no tomorrow. For right now, I’ll take whatever words she’s able to give me.